You Are Not Alone.

Receiving an SCN1A Gain-of-Function diagnosis is overwhelming. We are here to help you navigate the science, connect with other families, and move forward with clarity and hope.

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Community Support

Connect with other families who truly understand the unique challenges of a Gain-of-Function diagnosis and neonatal epilepsy.

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Clinical Guidance

Access resources that help you and your medical team differentiate your child's needs from standard SCN1A treatment protocols.

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Accelerate a Cure

By sharing your child's journey, you provide the data researchers need to develop targeted therapies specifically for GoF mutations.

Your Data, Protected.

🔒 HIPAA Compliant 🛡️ Secure Storage

We take your family's privacy with the utmost seriousness. Our registry utilizes a HIPAA-compliant infrastructure.

Genetic reports and medical histories are stored in encrypted environments, accessible only to authorized clinical coordinators. We never sell your data; we only utilize de-identified information to help researchers find a cure.

Join the Warrior Network

Whether your diagnosis is brand new or several years old, your participation is the key to our success. Let's build a future together.

Join the Registry Meet the Warriors